In discussing late stage dementia the use of dolls and stuffed animals was the topic of the last Round Table Discussion Group. Almost unanimously we agreed that despite the initial discomfort of feeling that we might be patronizing and infantilizing an older adult, the fact is that this behavioral and non-pharmacological intervention could be beneficial and calming to an otherwise distressed patient.
This was highlighted by one of us who recounted an experience of working with an older patient in the advanced stages of dementia. Daily, Mary had a series of falls while at lunch time. Despite multiple efforts at trying to keep her from getting up during mealtime, she continued to do so. This one gifted caregiver eventually sat down with Mary at the lunch table and engaged her in a conversation and asked “Where are you going?” She replied that she was looking for the baby, “The baby is crying,” she said. The care staff found a baby doll, gave it to Mary and she was then able to remain in her seat for the duration of mealtimes as she tended to her crying baby. Unfortunately, Mary’s family was less than pleased seeing their mother and grandmother cradling a child’s toy. But again, the experienced care staff took the time and effort to educate the family about late stage disease and behavioral interventions. Eventually the family came to accept Mary’s “relationship” with the baby doll, especially when Mary named the baby after a beloved child who had died at a young age.
As referenced in the article, this is a perfect example of Kitwood’s statement “if a need is met, a person may be able to expand.” In the above instance, a need was met for Mary and she was able to “expand” or participate in other activities as she was no longer distracted and agitated.
I was particularly interested in the connection that this article made to attachment theory, which I had studied as an undergraduate student in developmental psychology. That dementia patients are expressing their attachments to loved ones, but do not the have the verbal capacity to articulate these losses, using sensory objects is understandable. From attachment theory, in a similar way that children use transitional objects, such as blankets and stuffed animals, to help them through stressful times in their development, it is possible to consider that dementia patients too may feel lost, not in control and distressed and may be comforted by familiar objects to touch, hold and cuddle.
It was suggested that the use of dolls and child-like toys, or activities that may seem demeaning, can be difficult for family members to accept because of their emotional attachment to their loved one. Family members are often too focused on losing the person they once were and it is jarring to see an 80 year old playing in a child-like fashion. Indeed there are critics of the use of doll therapy for this exact reason. But activity and care staff from long-term care settings are advocates of these techniques. Learning to “join the moment” and find pleasure in the present is a skill that care staff can model for families.
The use of doll therapy is one aspect of the ethical nature of lying to dementia patients. Whether it is lying about the car not working, or a visitor who will be coming shortly, or using a doll, it can be uncomfortable for families and staff. In order to ease our own discomfort and to offer families some suggestions for how to navigate this we each had some choice euphemisms: dissuade, creative deception, adjusting the truth, re-framing, pretending, benign manipulation.
James, et al* made an effort to develop some guidelines for care staff that I believe are well considered, with special regard for both the person with dementia and for care staff. These are useful and we can and should be mindful of them. Some of these guidelines include:
- Lies should only be told if they are in the best interest of the resident
- Consideration should be given to residents’ ability to retain the truth
- Communication with family should be required and family consent gained
- A lie should be used consistently and across people and settings
- Staff should feel supported and not feel at risk of being accused of misconduct
- The act of telling lies should not lead staff to disrespect the residents.
Too often we forget about the late stages of dementia diseases. Those of us who have a clinical practice helping families adjust to the changes brought on by one family member who has an Alzheimer’s disease diagnosis, leave the late stages to dedicated care staff in residential memory care units. My first experience working with dementia was in a long-term care facility on a dementia unit. It was a profound experience and though it was eventually not my greatest interest, understanding the ultimate trajectory of Alzheimer’s has informed my practice and understanding of the process. Too often we are shy about painting a gloom-and-doom picture for families, fearful of their responses. Certainly families wish to maintain as much normality as possible before residential care may become a necessity, but for some families having more information about late stages and offering it at the right time may be helpful in the continual adjustments that must be made.
The Round Table Discussion Group meets monthly for an interdisciplinary conversation with experienced professionals in the field of aging. Each conversation uses one or two journal articles as reference points. The articles read for this discussion were:
The Therapeutic Use of Doll Therapy in Dementia, Gary Mitchell & Hugh O’Donnell, British Journal of Nursing, 2013, Vol 22, No6
Lying to People With Dementia: Developing Ethical Guidelines for Care Settings, Ian A. James, et al, International Journal of Geriatric Psychiatry, 2006: 21: 800-801